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Thread: Finally coming out of the woodwork to say hello...

  1. #1
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    Finally coming out of the woodwork to say hello...

    Hello everyone,

    I've been lurking on the forum for a few months now as I've strongly suspected my partner has MND and now it's unfortunately been confirmed.

    I find it really comforting to know we're not the only ones going through this- the forum really is invaluable in such an isolating predicament. Thanks to everyone who posts on here regularly- it has helped me to get a bit of perspective on what it's really like to live with MND or to be an MND carer and to realise it isn't quite as terrifying as it might seem at first.
    As we've been pretty sure it was MND since about May, we've already gone through the period of extreme shock and the diagnosis itself wasn't too bad and am actually feeling slightly more positive now we know some help is at hand.

    Hopefully I'll talk to you all more in the future,

    Tess

  2. #2
    Forum Member Barry52's Avatar
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    Welcome Tess.

    You need lurk no more as you will find new friends on here. We are in this together and whether it is just some comforting words, advice or a rant you and your partner will find support. From what you say I assume you have all the support services in place.

    I can recommend attending a local MNDA branch meeting if you have one nearby. You will find details on the website of where they are located.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  3. #3
    Forum Member Terry's Avatar
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    Hi Tess and welcome to the forum;

    It's good to hear that we have already been useful. Please feel free to ask any questions or share things.

    Mnda branch meeting are quite supportive and hospices are a great place for help and advise too as they are used to helping us live as good as we can.

    Being diagnosed and having a label is handy as we can get more help and it is easier to ask or explain to people. It's would be nice to have a different label or diagnoses.

    Best wishes, Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  4. #4
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    Hi Tess,
    Welcome to the forum. I'm glad you've found it useful so far.
    I too was officially diagnosed in May and that seems so long ago now.
    I can't really add anything to what Barry and Terry have already said.
    Take care,
    Bern x

  5. #5
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    Hi everyone, good to hear from you and thanks for the welcome. We're moving at the moment which adds another layer of stress to it all so we haven't quite got the full team in place but hopefully we will soon. Thanks for the suggestions- will definitely get in touch with the MNDA.

    Bern- yes, May seems a very long time ago now. We had a pretty rough time emotionally for a couple of months back then but we seem to be coping a bit better now- hope it lasts!

  6. #6
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    Welcome Tess

    You found the right place for support, advice, knowledge, comfort, and friendship by a group of wonderful people that truly understand what you and your family are experiencing.

    Wishing you both all the best in the days ahead.

    CCxox
    .

  7. #7
    Forum Member Ellie's Avatar
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    Oct 2012
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    Welcome to you both Tess.

    Hope the move goes smoothly.

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  8. #8
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    Thanks Ellie and CC- good to hear from you both.

  9. #9
    Forum Member Streetwise's Avatar
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    I'm an ex carer ,had no support from my family!mam has been dead 17 years ,I'm autistic, so grammar is non existent .

  10. #10
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    Hi Streetwise, I was a carer for my Mum and Dad too. Good to hear from you.

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